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Welcome to Connecting ALS. We continue today with our coverage of the International Alliance of ALS/MND Associations meeting.
Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
This transcript was exported on Dec 20, 2022 - view latest version here.
Jeremy Holden:
Hello everyone and welcome to Connecting ALS. I am your host Jeremy Holden. As I promised yesterday, we are connecting with you every day this week to bring you insight from the discussions happening out in San Diego, California during the International Alliance of ALS/MND Association's meetings, and the Allied Professionals Forum. Today, we're going to dig into one of the key components of making ALS a livable disease, and that is optimizing current care and making sure people have access to the care they need.
I recently sat down with Maureen Clark, Director of Business Intelligence at the ALS Association to get a sense of what we know today about access to care and what is being done to improve that access going forward. Well, Maureen, thank you so much for being with us today on Connecting ALS.
Maureen Clark:
I appreciate being here. Thank you for asking.
Jeremy Holden:
You're covering a very important topic during the International Alliance meetings and that is really about enhancing people's ability to access high quality healthcare. It strikes me. Listeners are probably aware of some of the challenges that exist that need to be overcome, but what's the landscape look like? What is preventing some people from being able to access the care they need?
Maureen Clark:
Sometimes it can be distance of travel to a clinic. There are folks that live in rural areas and have the challenge of trying to get to a clinic that will provide the care. So we talk about things about transportation and trying to locate people that do live in that rural area so that we can provide that care.
Jeremy Holden:
Yeah, we've seen a lot in the last couple years with access to telehealth, and I know some of the conversation around that is sure ... Legally permitting somebody to access telehealth is one thing, and then of course part of that conversation is, but do they have access to high speed broadband that enables them to use some of the tools? We've heard from so many people that we've been able to talk to here on connecting ALS about the challenges of traveling a great distance to get to clinic and the burden that that creates. What are we talking about out in San Diego about ways that we can address that? What's being done to optimize people's access to high quality healthcare?
Maureen Clark:
Yeah, I think for the conference one, we're going to be identifying in a general way, not a specific way, but more of a general way of where our population is, and then also what other things are around them? What kind of governmental sources that we have already available from the census or the CDC that will show us areas of vulnerability, of areas where there might be a medically underserved population of nursing and doctors as well as broadband internet? Who has internet, who does not? And then also areas where they may not have great health insurance, so putting all of those, what I call, layers into my presentation.
It's a mapping presentation, so you'll see that once we have a general idea of where our population is, it gives us a focus on maybe the attention that we can draw to it. Do we need to put a clinic there or is it something that we could do a telehealth opportunity? So that's the point of my presentation, is to just have conversation about what's next. What can we do, what can we put together to answer questions, have enough for the data points put together so that we can make a decent case for it?
Jeremy Holden:
Maureen, one of the things that I've heard some buzz about is efforts to develop clinic locator maps. What can you tell us about those efforts and how they can help address this issue of optimizing access to high-quality healthcare?
Maureen Clark:
At the Alliance, you'll see demonstrate a new tool that we have been developing called the Global Clinic Locator, and that compiles a very large data set that's been compiled by several different organizations around the world that are members of the International Alliance. Put those together, create this massive map around the world, and then it becomes an interactive map that people can access, type in their postal code or the name of the clinic that they're looking for, or even the country that they live in. Then we can offer them a service that will help them figure out where they want to go gather services, get their questions answered, but it gives them something that will allow them to find some information because we have countries that we know there's ALS there, but they may not have some tool available to them. We want to make this available.
Jeremy Holden:
Knowledge, as they say, is power, and empowering the community to know where to go for the care they need certainly is going to be a great tool to have. So Maureen, thanks so much for your time today. Really looking forward to hearing all the great content at the Alliance and the APF.
Maureen Clark:
It's going to be great. Thank you.
Jeremy Holden:
I want to thank my guest today, Maureen Clark. If you likeed this episode, share it with a friend, and while you're at it, please rate and review Connecting ALS wherever you listen to podcasts. It is a great way for us to connect with more listeners. Our production partner for this series is Citizen Race Car. Post Production by Alex Brower. Production Management by Gabriela Montequin, supervised by David Hoffman. That's going to do it for today. Thanks for tuning in. We'll connect with you again soon.
Connecting ALS - Helping the Global ALS_MND Comm... (Completed 12/20/22)
Transcript by Rev.com
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